Finally, we can set our own priorities! Read this before taking the survey.

The UK's Stoke Mandeville Spinal Foundation (SMSF) together with the The James Lind Alliance have come together to provide a unique opportunity for the spinal cord injury, cauda equina and transverse myelitis communities to shape the future research priorities by conducting priority setting survey.  The survey is not only open to individuals living with those conditions but also families, carers, health and social care professionals.      

So what does this mean?  And why should I care?  Well, for one it’s incredibly important for everyone in the Community to take the opportunity to express what they really want the answers to.  What is it that means the most to you?  What answers would make the biggest difference to your life?  Secondly, this is a rare opportunity for opinions to actually count as the results of this survey could well serve to dictate how funds are directed in the future.  As we know that research funds in this field are not exhaustive, it’s vital that the results of this survey deliver a realistic and honest view of our desires and needs.     

The context of this particular survey is 'Quality of Life'.  Now, it’s important we take some time to analyse this term carefully before taking the survey.  'Quality of Life' is a term that is often used broadly by stakeholders within the Community and often such broad statements can serve to dilute or detract from the underlying factors of a complex multi-dimensional problem such as SCI. 

WHO defines 'Quality of Life' as the individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.        

Incidentally, this isn't the first survey that the SCI Community has had the opportunity to be involved in and it certainly won’t be the last.  One of the most notable surveys conducted in recent times was by Dr Kim Anderson at Reeve-Irvine California (she’s now based at The Miami Project, Florida).  This particular survey was specifically designed to rank specific functions in order of importance to the individual and their quality of life.  The individuals were asked to rank arm/hand function, upper body/trunk strength and balance, bladder bowel function, elimination of dysreflexia, sexual function, elimination of chronic pain, normal sensation and walking movement in order of importance. 

Unsurprisingly, the results of this survey were fairly predictable.  Quadriplegics saw hand and arm function as a priority and paraplegics saw bowel, bladder and sexual function as the priority.  Both quadriplegics and paraplegics shared bladder/bowel and sexual function as high priorities whereas paraplegics desired walking movement as a bigger priority than quadriplegics.      

Are you nodding your head in agreement so far?  All pretty obvious stuff so far right?  

Now, before all of you quadriplegics go rushing off to complete the survey with 'give me hand/arm function' or all of you paraplegics ask for answers to your 'incontinence issues' can I encourage you to take a step back (no pun intended) to have a look at the categories once again and in particular the underlying cause of each:

       

There are also some additional functional categories that could be considered such as elimination of spasticity or ability to breathe.  Again, these are due to a common theme – irreversible damage to the spinal cord.  When you consider that spinal cord injuries are so diverse and the outcomes so varied are we actually getting the priorities right when ranking these functions in order of importance? Should we even be ranking these functions at all?   

Rather than ask for a solution to a symptom(s) that we are facing in this current moment how about we look to find a solution to the underlying cause? Could it be that the real question we want to ask is 'how can we repair the damage to the spinal cord to restore function?'  Wouldn't this be more a more compelling and unified statement from our Community and one that would result in more research funds being directed to regeneration and repair of the damaged cord rather than scattered projects researching symptoms?     

'What about pressure sores?!' cry health and social care professionals?  What about 'osteoporosis, infertility, depression, obesity, cardiovascular disease, type-2 diabetes, urinary tract infections, unemployment, social isolation, poverty and suicide'? Yes, admittedly these are massive ongoing issues amongst the SCI Community and constitute a massive burden on our health systems.  And yes, there is probably lots of new research that could be undertaken in these areas to improve quality of life and reduce some of those healthcare costs.  BUT, almost all of these issues are as a result of a loss of function, independence and well being to the individual.    

A wise man, who has worked at the sharp end of the SCI field for over 30 years recently claimed that Care for individuals in the SCI Community has infinite bounds and that it’s high time that we acknowledged Cure is the ultimate form of Quality of Life.  A very interesting and profound statement from a well-respected clinician and researcher in the field. 

What does he mean by infinite bounds? It means no matter how many carers you have, how big your financial compensation package is, how light your wheelchair is, how many accessible shops and restaurants there are, how much rehabilitation is available to you, how many incontinence products available to you and how much assistive technology is available – it cannot ever compare with the gains in health, independence and well being resulting from the return of function.    

And with this in mind, I’d like to leave you with the following statement before you complete the survey:

The repair of the chronically damaged spinal cord is the ultimate form of Quality of Life for the SCI Community!

I strongly urge you to take part in this survey and more importantly, ask the right question ie how can we repair the damaged spinal cord to restore function? 

The survey is here.          

Access to the previously published Reeve-Irvine paper and survey can be found here.

_________________

The only thing that I can take credit for in the writing of today's blog post is the good sense to have let someone else write it in a much more eloquent way than I ever could.

-Dennis-

SEND A FREE ONLINE FAX to Governor Jerry Brown and tell him to sign the Roman Reed Bill

First I'm going to thank all of you who already signed our CureParalysis card to the governor, and now I want you to do one more thing. SEND A FAX to the governor and ask him to sign AB714 (the Roman Reed bill) into law and add a million dollars a year to paralysis cure funding.

If you don't have a fax or don't want to spend the money faxing to California, you can use

THE FREE ONLINE FAX FORM by filling in the form below.

Don't put this off as it only take about 1 minute. If you have your own fax, you can fax it to 916-558-3160.

Don't know what to say? Well, be brief and just tell him that you are expecting him to sign AB714 into law.

Here's what I'm sending and I've bolded the part that you can can just copy and paste into the ONLINE FREE FAX FORM.
____________________________________________
Dear Governor Brown,

My name is Dennis Tesolat and I live in Osaka, Japan and I'm a paraplegic. I was one of the people who helped organise the CureParalysis card that I hope you'll see. In it 500 people from many places, including California, signed the card in the hope that you will sign AB714.

Please sign AB714 into law; do not veto it like you did last year. I wasn't happy when it was vetoed last year, but I could understand your reasoning against fee-based government. This year, as you know, the bill asks for $1 million from the general fund, so based on your thinking last year, you now need to sign this bill into law and bring hope to the paralysed all over the world.

Thank you.
____________________________________________

Also, if you're in California, please make sure the Governor knows it.

Campaign has now ended. Thanks for your support.

California governor to decide fate of paralysis research law

We're almost there.

For those of you who have followed our campaigns to restore funding to the Roman Reed law for paralysis cure research in California over the last two years, we're now at a crucial time.

Yesterday, the bill passed the final stage of the legislative process by passing the full California Senate 39 to nil. This means that the bill now moves to the governor's mansion where he will need to sign it before becoming law.

We knew this day was coming so we were busy over the last few months getting people to sign our "CureParalysis" card which I sent to California last night. About 500 people signed from all over the world and we hope that when Governor Brown gets ready to sign that he first reads the pleas of people for a cure for paralysis.

With fingers crossed.

For a more thorough history of the Roman Reed law, please see Don Reed's article at StemCellBattles.